Chemotherapy
I just had a post operative appointment with my surgeon. He successfully removed the cancerous left para-aortic lymph node (on June 29, 2020) that had been a recurrence from the Stage IB, FIGO 2 endometrioid endometrial adenocarcenoma (Total hysterectomy in Jan 2020). He now recommends chemotherapy and possibly targeted radiation to the left para-aortic lymph node area. The chemotherapy treatment he recommends is 6 cycles, one every three weeks, which would take about 4 months. Each session would be about 3 hours. Does anyone know if this would be considered a low dose of chemotherapy? Is there a standard treatment? Do some people have chemotherapy every week or every two weeks? I just wanted to know about the dosage of chemotherapy and how toxic it would be.
About the ice baths to prevent neuropathy, do I need to keep my hands and feet in the ice baths for the entire 3 hours or can I take them out for a while?
Comments
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Orchid65, The standard chemo
Orchid65, The standard chemo treatment is 6 treatments 3 weeks apart. Most get Carboplatin/Taxol. My infusions lasted more than 3 hours but that also includes the premeds they give you to help with side effects. I did not do ice baths so can't tell you from personal experience what I did. Many ladies here have posted that they kept their hands and feet in ice water for the entire time. I'm sure someone will be along to provide more input.
If you have the time, there is an older thread that may be helpful: 'Ladies Going Through Chemo'. Lots of documentation and actual experiences shared by many of us.
Chemo is not easy, but it is doable. The 4 months goes by fairly quickly and you will get into a routine. The first one is the most scary because you don't know how your body will react.
Good luck and please come back with any questions. Someone will be able to answer you.
Love and Hugs,
Cindi
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Cindi, thanks for the
Cindi, thanks for the reminder of that thread! cmb has that one posted at the top of the board under FAQ. I pulled up and put it here for ease:
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Orchid, I'm an extremely
Orchid, I'm an extremely controlling MD. It was very, very hard for me to go through chemo, knowing all the toxicities. But you have to understand that the chemo regimens have been chosen by decades of controlled studies, comparing one regimen to the next, and you cannot redo all that research in a couple of weeks for yourself. You have to give up control here, and trust that the recommended regimen is recommended for a reason.
Take the offered carboplatin/taxol regimen. Ice your hands and feet during the taxol, as I've described. I have very little neuropathy - no stabbing pains, only slight numbness in the ball of my left foot, because of falling asleep with the ball resting on the bottom of the ice water box. Have ondansetron ready at home in case you have nausea.
As for radiation, I would start inquiring NOW, ahead of time, about proton beam radiation. From what I understand, it is more specifically directed at the particular area. It IS available in your area (Seattle?) but you're probably going to have an insurance battle on your hands, so that's why I say start looking into it immediately.
You can and will get through this, and hopefully, with the chemo and appropriate radiation, it won't come back, and you can get on with your life.
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Don’t be afraid to ice
The initial shock and uncomfortable feeling goes away in a few minutes. You will still feel the cold but it is not bad. Better than a lifetime of horrible neuropathy. I slept through most of my infusions, so the icing was not bad enough to keep me awake. I assume there is a standard dose initially. Due to side effects they reduced my dose by 20% for the last treatments. Everone’s response to the toxicity is different, some work during chemo, some, (like me) could not get off the couch, and some of the side effects are cumulative, some not. I received a great deal of one on one patient education plus enough booklets to staff a library. Perhaps your oncologist has the resources to do the same. I think that for most of us the reality of going through chemo was not as bad as what our fear of chemo conjured up. It is not pleasant but very doable. Good luck to you.
Denise
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LinkNoTimeForCancer said:Cindi, thanks for the
Cindi, thanks for the reminder of that thread! cmb has that one posted at the top of the board under FAQ. I pulled up and put it here for ease:
Thanks for the link to the thread. I am getting a better idea of what it is like to go through chemo. What is a port and who may need it? If I am supposed to go back to work, is there a better day of the week to have the chemo treatment? Should I start shopping for a wig now?
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PortOrchid65 said:Link
Thanks for the link to the thread. I am getting a better idea of what it is like to go through chemo. What is a port and who may need it? If I am supposed to go back to work, is there a better day of the week to have the chemo treatment? Should I start shopping for a wig now?
It almost looks like a dime-sized computer mouse that they put under your sking near your shoulder. They inject iv fluids into the soft body and the "tail" carries the fluids into larger blood vessels than what are in your arms. Chemo drugs are somewhat caustic, so delivering them into larger areas helps to keep your veins from being excoriated during chemo and also saves you from someone needing to repeatedly fish for a vein. They usually sterilize the site and numb it before each infusion and, after chemo is done, flush it every couple of weeks until it is removed.
Getting a port placed is an outpatient procedure and they usually sedate you for it, but not put you under completely. You don't feel anything more than pressure, but it is kind of weird and possibly a bit overwhelming to have 3 people or so working on you at the same time doing the placement and monitoring you. I was a bit jumpy during it, but that's because I didn't know what to expect. It was pretty easy, but one is so anxious about everything when recovering from surgery and facing chemo. Just tell them to be generous with the sedatives if you are anxious.
You'll probably be sore for about a week after placement, but once it heals it shouldn't inhibit you from doing anything, including sleeping on that shoulder. Some people have issues with bleeding, infection, or bruisng depending on what meds they they are taking or other health issues, but most of us are pretty happy to have the port and tend to keep them for a year or two after chemo for just in case. Some can't wait to get them out because it feels like they are just waiting for a recurrence. It's an individual choice.
I think everyone should get one because it really helps to get through chemo infusions and if you'reone of the ones who has big troubles with the port, it's not a big deal to get it out; they do it outpatient using a local.
If you are working through chemo, Thursdays or Wednesdays are good infusion days so you can have the weekends to baby yourself when the worst fatigue its.
Being bald makes wig shopping easier, but I'd do it earlier because you'll be immunosuppressed between infusions and dealing with times of really surprising fatigue. You'll probably be less self conscious shopping while you have your own hair, too. BTW, a lot of people shave their heads when they get tired of shedding, but Id consider just cropping it to about an inch long. I put ice in a gallon ziploc bag on my head during infusions and as a result always had some "peach fuzz" covering my scalp instead of a cue ball. That little bit helped my scalp not feel so sensitive when sleeping on a pillow or wearing a hat or wig. I didn't get the razor rash some people get, either. Just a suggestion.
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I had a nurse visit to the
I had a nurse visit to the infusion center before the first infusion. It was very helpful. I was still frightened, but it helped to have had that visit beforehand with a nurse explaining to me exactly what would happen, and to see where it would happen.
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PortMAbound said:Port
It almost looks like a dime-sized computer mouse that they put under your sking near your shoulder. They inject iv fluids into the soft body and the "tail" carries the fluids into larger blood vessels than what are in your arms. Chemo drugs are somewhat caustic, so delivering them into larger areas helps to keep your veins from being excoriated during chemo and also saves you from someone needing to repeatedly fish for a vein. They usually sterilize the site and numb it before each infusion and, after chemo is done, flush it every couple of weeks until it is removed.
Getting a port placed is an outpatient procedure and they usually sedate you for it, but not put you under completely. You don't feel anything more than pressure, but it is kind of weird and possibly a bit overwhelming to have 3 people or so working on you at the same time doing the placement and monitoring you. I was a bit jumpy during it, but that's because I didn't know what to expect. It was pretty easy, but one is so anxious about everything when recovering from surgery and facing chemo. Just tell them to be generous with the sedatives if you are anxious.
You'll probably be sore for about a week after placement, but once it heals it shouldn't inhibit you from doing anything, including sleeping on that shoulder. Some people have issues with bleeding, infection, or bruisng depending on what meds they they are taking or other health issues, but most of us are pretty happy to have the port and tend to keep them for a year or two after chemo for just in case. Some can't wait to get them out because it feels like they are just waiting for a recurrence. It's an individual choice.
I think everyone should get one because it really helps to get through chemo infusions and if you'reone of the ones who has big troubles with the port, it's not a big deal to get it out; they do it outpatient using a local.
If you are working through chemo, Thursdays or Wednesdays are good infusion days so you can have the weekends to baby yourself when the worst fatigue its.
Being bald makes wig shopping easier, but I'd do it earlier because you'll be immunosuppressed between infusions and dealing with times of really surprising fatigue. You'll probably be less self conscious shopping while you have your own hair, too. BTW, a lot of people shave their heads when they get tired of shedding, but Id consider just cropping it to about an inch long. I put ice in a gallon ziploc bag on my head during infusions and as a result always had some "peach fuzz" covering my scalp instead of a cue ball. That little bit helped my scalp not feel so sensitive when sleeping on a pillow or wearing a hat or wig. I didn't get the razor rash some people get, either. Just a suggestion.
Thanks for the information on the port. How far in advance do you need to put the port in before having chemo infusions? It is ok to keep it in you for several months?
So fatigue hits a couple days after the infusion? How about the nausea and constipation?
Thanks for the tips on the hair loss.
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Thanks for the tipszsazsa1 said:Orchid, I'm an extremely
Orchid, I'm an extremely controlling MD. It was very, very hard for me to go through chemo, knowing all the toxicities. But you have to understand that the chemo regimens have been chosen by decades of controlled studies, comparing one regimen to the next, and you cannot redo all that research in a couple of weeks for yourself. You have to give up control here, and trust that the recommended regimen is recommended for a reason.
Take the offered carboplatin/taxol regimen. Ice your hands and feet during the taxol, as I've described. I have very little neuropathy - no stabbing pains, only slight numbness in the ball of my left foot, because of falling asleep with the ball resting on the bottom of the ice water box. Have ondansetron ready at home in case you have nausea.
As for radiation, I would start inquiring NOW, ahead of time, about proton beam radiation. From what I understand, it is more specifically directed at the particular area. It IS available in your area (Seattle?) but you're probably going to have an insurance battle on your hands, so that's why I say start looking into it immediately.
You can and will get through this, and hopefully, with the chemo and appropriate radiation, it won't come back, and you can get on with your life.
Thanks for the tips. I will look into proton beam radiation. I am actually in Salinas, about an hour from San Jose.
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Chemotherapy responseBluebirdOne said:Don’t be afraid to ice
The initial shock and uncomfortable feeling goes away in a few minutes. You will still feel the cold but it is not bad. Better than a lifetime of horrible neuropathy. I slept through most of my infusions, so the icing was not bad enough to keep me awake. I assume there is a standard dose initially. Due to side effects they reduced my dose by 20% for the last treatments. Everone’s response to the toxicity is different, some work during chemo, some, (like me) could not get off the couch, and some of the side effects are cumulative, some not. I received a great deal of one on one patient education plus enough booklets to staff a library. Perhaps your oncologist has the resources to do the same. I think that for most of us the reality of going through chemo was not as bad as what our fear of chemo conjured up. It is not pleasant but very doable. Good luck to you.
Denise
Did your chemo team adjust the dosage of drug depending upon what your response was? So I need to tell the Chemo team how things are going, side effects, etc?
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Nurse visitzsazsa1 said:I had a nurse visit to the
I had a nurse visit to the infusion center before the first infusion. It was very helpful. I was still frightened, but it helped to have had that visit beforehand with a nurse explaining to me exactly what would happen, and to see where it would happen.
Sounds like this might be a good idea. Thanks.
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AlwaysOrchid65 said:Chemotherapy response
Did your chemo team adjust the dosage of drug depending upon what your response was? So I need to tell the Chemo team how things are going, side effects, etc?
Do not try to "just deal" with anything as you are going through chemo. This includes during infusions and when you are at home. The chemo nurses and your oncologist have many tricks in their bag to get you through everything safely while minimizing the side effects you end up having, but you have to keep them in the loop and never feel like you'd be "bothering" them, even after office hours. If you are ever reluctant to call, you can also check-in with us and we'll tell you otherwise. ;-). Odds are you'll be fine, but it can be hard to believe that until you get the first infusion behind you.
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DependsOrchid65 said:Port
Thanks for the information on the port. How far in advance do you need to put the port in before having chemo infusions? It is ok to keep it in you for several months?
So fatigue hits a couple days after the infusion? How about the nausea and constipation?
Thanks for the tips on the hair loss.
I wound up at the same hospital on the same morning to get my port put in as the wife of an usher at my church. I started my chemo a week later and she went straight to an infusion room after her port was put in. It all depends on others schedules I guess, but they don't necessarily wait for your incision to heal before they start using the port.
Nausea isn't a given and they usually give you medication ahead of time to have on hand if you need it. I never used mine and never had nausea, but others have needed to take it preventively.
Chemo slows intestinal peristalsis way down, so constipation is a big deal during chemo. You really have to keep pushing yourself to drink way more than you probably are used to doing and it helps if your oncologist advises a regimen to prevent impaction or blockage. My doctor advised a low fiber diet (eating fiber doesn't work like it normally would and can actually cause a blockage) and taking Miralax twice daily. Some doctors have different preferences or practices, but you really need to take preventive measures for this during chemo because you can end up in an ER with the kind of constipation chemo can cause if you don't. It's as important as icing to prevent neuropathy in my book.
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Port
You will not regret getting a port. I personally would not had been able to do chemo without A port! I'm a person considered a hard stick, which means being stuck several times in order for them to find a vein to Access to get blood! I could not imagine several sticks to get chemo started, just the thought of chemo my anxiety was through the roof! I have also been able to have them use the port for all blood draws and ct scan iv. And pet scan iv and even iv for colonoscopy! Just tell them in advance and they will have the port access kit available and trained med professional to access port for the iv. I have been Ned sine March 29 2019 Today Now July 27 2020. I have my port still. I need. It for blood draws and for IV s ! Im not keeping it for the reason for more chemo if there is a recurrence. Bc I will not do chemo ever again!
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No, it was reduced due to earlyOrchid65 said:Chemotherapy response
Did your chemo team adjust the dosage of drug depending upon what your response was? So I need to tell the Chemo team how things are going, side effects, etc?
side effects. Neuropathy, nausea, lots of bone pain, after one infusion. I iced, drank about a gallon of water a day in the first days, also I had a terrible metallic taste in my mouth that made everything taste bad. I did take the anti-nausea meds before chemo, and after. I only vomited once, but never did after they reduced the dose. I had constipation followed by diarrhea. Also the docs and nurse made sure I was aware that they were just a phone call away and to call them if I had questions or was in distress. I also was advised to write down my symptoms as they occurred, because it is hard to recall three weeks later at the next oncologists appt. So I knew that day three I would get bone pain, lasting 3 days, Nausea started on this day, ended on another. Neuropathy was in fingers, toes, erc. Helped to see the ebb and flow of symptoms and then you knew what to expect, when at your next infusion. Truthfully for me the fatigue was difficult but also the boredom was about as bad. Only so many hours a day one can read, talk on the phone or watch tv. I usually only went out the third week. Everyone is so different so take heart that you may only have some of these side effects, and they won’t be bad. We are here for you.
Denise
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Another vote for a port. I
Another vote for a port. I had one put in before chemo, and it's a HUGE help. I don't have blood drawn from it unless they're doing an infusion, too. If all I need is a blood draw, I have it done peripherally, because I don't want the port to get infected and need to be removed. I watch the nurses like a hawk when they're accessing the port, to make sure that sterile procedure is observed stringently. I developed a clot at placement, but later on we realized that it was because of the non-yet-diagnosed lymphoma I had at the same time. Most people don't develop clots from placement. Once the clot was reabsorbed, the port's been no trouble at all. I forget it's there in between infusions. The nurses tell me that people come in with ports that haven't been touched for two years, and they STILL manage to get them open and working again. Unbelievable.
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Port still in
I agree with the pro port people. The port was a game changer during chemo. Just put the lidocaine on two hours before and I don't feel a thing.
It's been 3 years since chemo (for my first recurrence) and I still have my port. I was going to get it removed and had the referral to do so, when I had a 2nd recurrance 6 months after chemo. Now, no one is suggesting that I get it removed. I've been taking Ibrance and an aromatase inhibitor for maintenance for 2 and a half years and doing very well. I have to go in every month for a port flush and blood draw (for the Ibrance). The nurses have all been fine in how they handle it. It doesn't really bother me. I have even worn some tops that exposed it and didn't mind.
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As someone who did not get a
As someone who did not get a port, it was not offered, I also figured "it is only six". Well the education of chemotherapy, after the first treatment, and I also have small veins, I said to the nurse, "that wasn't so bad, we'll have to remember that site for nex time." That is when she told me "no, that chemo makes your veins hard." I was sad to hear that and #2 went well three weeks later. Then I got to treatment 3 and they had to call the IV team. Boy, that was a tough day. Since I had radiation 'sandwiched' between the chemo it actually gave my veins a break and I was able to do 4 - 6 ok. I am still ok with my decision, it was the right one for me, but as you see, a LOT of women have them and I am probably the exception here. This is just to give you another perspective.
If this all seems so overwhelming, it is understandable. Take a breath. We are all here for you.
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No Port
Thought same, it's only 6. I did ok. In hind site I wish I had been more informed. Veins got harder to find. After infusion they were sore, ached some and then disappeared never to come back. This is ok so for an not sorry for choice. if I should need chemo again I will need to use port as veins just aren't there any more.
For me biggest issue was drinking lots to flush out after chemo and keep GI tract moving! Found that the sooner I cleared all of chemo drugs I could the quicker I recovered. All of it is very doable and keep that " can do" attitude going. Good luck!
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Another thought on the Port
I had my first infusion through my vein because I could not get into the surgeon beforehand. It went fine. I do not recommend getting the port put in the day after the infusion. I was pretty miserable for a few days. I did not like the port and felt its presence always. At Memorial Sloan Kettering where I had a second opinion, they use the vein if possible. My son-in-law is a physician researcher there and recommended the vein. However, my local oncologist really preferred a port so I went with that. I had no problems getting the chemo through the port but I always felt its presence. Psychologically it was a constant reminder of my disease and possible recurrence and I could not wait to have it removed which I did a few months after my last infusion. Both getting it put in and taking it out were simple procedures. If I should have a recurrence and decide to have infusions again, I will probably insist on the vein. I think it's all personal preference and what your body can tolerate. I will also relate to what ChessieMae said about fluids. I drank and drank water and continue to drink lots more than I did before I was diagnosed. I made sure to drink at least 64 ounces a day of water. Now I make sure I get in 48 ounces. I don't count any other liquids I take in, just the water. I also worked with my nurse practitioner after my first infusion on dealing with a plan to deal with severe constipation which I suffered. The plan worked so I suggest you talk about this possibility right away. Good luck! It's a journey no one wants but as you can see its doable!
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